Conceptual Framework of Self-Advocacy

The current ANS featured article is titled “A Conceptual Framework of Self-advocacy in Women With Cancer” authored by Teresa H. Thomas, PhD, RN; Heidi S. Donovan, PhD, RN; Margaret Q. Rosenzweig, PhD, CRNP-C, AOCNP, FAAN; Catherine M. Bender, PhD, RN, FAAN; and Yael Schenker, MD, MAS, FAAHPM. In this article the authors discuss new insights about the process of self-advocacy. Here is a message from Dr. Thomas about this work:

Teresa Thomas

The past two decades have seen increasing attention put on “patient-centered care.” Healthcare systems and providers strive to put the patient at the forefront of their services. But what about the patient? What are we asking patients to do when we attempt to be patient-centered? How are we asking them to do so? And importantly, are all patients equally able to engage in patient-centered care?

Our team’s research in patient self-advocacy strives to answer these questions in the context of women with cancer. What happens when a woman with cancer encounters a challenging situation?  How does she assert her values and priorities to ensure her needs are met? This article presents our conceptual framework of self-advocacy among women with cancer.

Through our work with women with cancer, we know that not all individuals can speak up for themselves. Individuals quickly learn that if they don’t assert themselves, their care will at best not meet with needs and at worst be mismanaged and lead to their own poor health:

• • Individuals get lost in the healthcare system because they don’t know how to question their providers or seek clarification about their health.
  • Individuals hesitate to share the side-effects of treatment with their social circles because they don’t want to be considered a burden.
  • Individuals neglect their needs for the sake of not being perceived as rude or questioning.

Two observations drive this work. First, we noticed that research in patient empowerment and self-management focused on supporting patients in performing the tasks of managing their illness. While critical, we also recognize that individuals need support in doing more than just the “tasks” of being a patient. We want to create a language and framework that recognize the individual holistically and point to ways in which they can use their strengths to address their health concerns.

Second, we noticed a lack of patient-driven solutions to addressing disparities and inequities in outcomes. While equipping patients with self-advocacy skills cannot overcome the intertwined systems that perpetuate health inequities, there are ways in which patients can actively assert themselves to address challenges in their healthcare and social support networks.

We encourage others – by engaging in our article – to explore the concepts of self-advocacy, critique and refine this framework, and ultimately develop evidence-based ways to support individuals in achieving the goals of patient-centered care.